Hi,
I am new to this so hope i am doing this right! Diagnosed with breast cancer 2002 when i was 38 lobular grade 2, 1 lymph node involvement. Had lumpectomy chemo radio zoladex and tamoxifen. I have been fine since mammo all clear etc. Had very bad back pre x mas which improved ,now have no symptoms at all. At routine review oncologist decided to do ct scan which found one very small spot on spine which they are almost sure is a bone met. I’ve since had bone scan and there are no signs of bone mets anywhere else.I got the results 2 weeks ago. I am back on zoladex awaiting to have ovaries out and started bisphosphanates this week I am still so shocked as i feel so well. My husband is finding it hard to cope with the diagnosis even more so as we weren’t together when i had cancer first time round, my children appear to be taking it in their stride.I am just finding it hard to take it all in. Any advice would be really welcome. Thanks. x
Hi Angelina,
I would just like to welcome you to the forum and to say I am very sorry you have to join us here. Everyone here is really lovely and full of great information and help and I hope you soon find your way around.
I don’t have bone mets so can be of no help here but there are plenty of others who will be able to advise.
Take care,
Jenny
x
Hi Angelina,
I too am sorry you have had to join us here. I am sure you will find plenty of support as we share our experiences with you. It is always such a shock when you are first told you have secondaries. My world felt as if it was falling apart and I was convinced I hadnt got long to live. Well… that was back in 2002 and my bone mets had spread everywhere. I was first dx with breast cancer in 1990. When my bone mets was found I was put on bisphosphonates - my brew was pamidronate, but there are a few other types as well. A year later I was put on herceptin cos I was having trouble with a number of lymph nodes and they checked back on tissue they removed at previous mastectomy and found I was her2+++. So I have been on both drugs for some time now. Hopefully you will find the bisphosphonates will keep it well under control with minimal side effects. I found life went on pretty much as normal and had very little pain until just recently. If pain gets too much they can treat the area with some radiotherapy.
Do keep posting and let us know how things go for you - and ask away anything you need to know.
Dawn
xxx
Hi Angelina
Sorry you’ve have to join us, but welcome. I was dx Jan 07 with lobular cancer too, bone mets a couple weeks later, two years down the line I still have not had chemo and have generally felt well. I take Bonderant and was on Tamoxifen for a year then changed to Femara when ovaries removed. What I’m trying to say is, bone mets is very treatable. I see my onc every 3 months for blood tests, examination and can ring my bcn if have any concerns.
You head must be all over the place and like Dawn I was convinced I wouldn’t live long, but gradually I’ve learned to live with this disease, still think about it everyday, still have some dark moments, but most of the time its not my first thought in the morning or my last thought at night.
Keep us posted and take care
Hi Everyone,
Thanks for you comments and support i don’t feel so alone now or feel that i am going to die tomorrow and that means the world! My main aim is too carry on with normal life.However started bondronat few days ago orally. Its making me feel so nauseous couldn’t go in to work ,hopefully this be better today.Hormone levels are now plummenting after zoladex as i find myself post menopausal for second time! and a bit tearful… Thinking that chocolate cake and lattes might be the best medicine for heart and soul. Thanks again x
Hi Angelina
Sorry you’ve had to join us here but glad you’re finding the support helpful - I know I do!! I can’t help personally re the nausea with the bondronat as I’m on Pamidronate infusions but my mum takes weekly bisphosphonates for her osteoporosis and I know they sometimes make her feel very sick. Hope the effects wear off soon - I agree that carrying on with normal life whenever possible is the way to go.
I like the sound of the chocolate cake and lattes, very good plan!!
Take care
Lesley x
Hi Angelina…sorry you have to join us…you will find much support here. I was diagnosed with bone mets in 2003, still here and life is really quite ‘‘normal.’’ I’m also on Bondronat. There’s been some useful threads recently on bisphosphonates. I make sure I only take the tablet after a 6 hour fast, with tap water and then nothing else for an hour. Even when doing all this some just don’t get on with Bondronat but there are also the infusions, I had those to start with so there’s another alternative if Bondronat continues to make you feel nauseous. Take Care…Belinda…x
I have posted this for new user Andrew
Jo, Facilitator.
Hi, sorry to hear your news.
I was diagnosed with breast cancer in 2003, after receiving Chemotherapy and radiotherapy all was going well, approaching my five years. I love walking and for a couple of weeks noticed my hip and ribs felt achy.As I was taking a group of children away for a sports camp I decided to go to GP (wouldnt have gone otherwise) who sent me for MRI, on my return from the camp, I got the news that they had found a secondary on my spine and after CT/PET confirmed spine neck skull ribs and hip.Blood test showed a sharp rise in the tumour markers.
I was very confused for a while on what to expect.
I have been on Zometa and capecitabine(oral chemo) for a year now.
PET scans have activity (alot less) in Neck and Hip, and tumour markers are now 75 compared to 370 last April.
Still not sure what to expect, but making the most of every thing I can. Is any one else on this chemo?
Sheena
Hi everyone
Angelina - the chocolate cake and lattes are fine for through the week, but by the weekend the bottle of wine beckons. Just realised in previous post, I’d spelt Bondronat wrong, you’d think I’d know after 2 years, honestly hadn’t been on the wine, hic!!
Sorry Sheena unable to help about the chemo. This must have been a big shock to you as well after 5 years. Whats a PET scan?
Hi Angelina
As others have said, so sorry you’ve had to join us, but you’ll hopefully feel very comfortable here with us and pick up lots of useful advice and information.
I’m a lot older than you (59) so don’t have quite the same problems as I was diagnosed post-menopausal. I was dx in late 2005 with bone metasteses at the same time as the primary breast cancer. It had spread to hips, spine, ribs, sternum, humerus. Was told two years was good life span. I’ve been on Bondronat since that time, had radiotherapy to left hip and humerus. I’m virtually pain-free now (2 or maybe 4 paracetamol a day, sometimes none) and pretty much getting on with my life.
You will be able to, too. Trust me, I’m a typist hehehe. (Sorry, don’t mean to make light of a serious topic 
)
Maureen xx
Hi Sheena…yes I’m on the same chemo…(capecitabine/xeloda)…I’ve found it ok…have you? I’ll have been on it a year this Spring.
Take Care…x
Hi Angelina
Like everyone posting, I’m also sorry you’ve had to “join the club no one wants to join”, but glad you’ve found us here, and hope we’ll be able to help you. I’ve been on Bondronat for my bone mets for over five years, and I’ve never had any side effects from it, so hope yours settles down soon. As Belinda said, you have to be very careful about how and when you take it.
Hi Sheena
In addition to the bone mets, I was also dx with liver mets in October 2003, and started Xeloda soon afterwards, first at a “normal” (2000mg x twice a day) dose, then after the vile hand/foot & digestive side effects, dropped to 1000mg x twice a day. It’s certainly worked well for me, and (along with an aromatase inhibitor for my ER+++ BC) has kept me pretty stable these five years. Hope it works as well for you.
Marilyn x
Hi Angelina
Sorry you’re joining us but you’re welcome here for support and advice. I was in your situation about this time last year so know exactly how you are feeling right now. This site has been invaluable for advice, support and a few giggles - well, more than a few 
I too thought I would die overnight but here I am feeling as normal as I ever did. My ‘story’ is so similar to yours as well. I had primary dx in 2003 aged 41, same treatment as you except the chemo. Tamoxifen seems to have stopped working for me which is why the bone mets came (we think). I also have a local recurrence which is how they then found the bone mets. Anyway I had a course of 6 x FEC last year and then have gone onto hormonal therapy - Arimidex as I’m very ER and PR+ve. I was pre menopausal before chemo as possibly menopausal after but I didn’t want any chances so back onto Zoladex for a few months and then had my ovaries ablated in November. Now I’m just on Arimidex and also Pamidronate every 4 weeks as an IV infusion. I feel OK on all of this and surprisingly not as menopausal as the 1st time round, hardly any hot flushes, just a bit achey in my joints at times but trying glucosamine etc to help with those. I’m currently waiting to get my scan appts through to see how things are but I had very good results from the chemo and the Pam. seems to be doing it’s job with the bones.
I hope you can deal with the shock of all this and realise this ain’t the end of the line yet! It takes a while and I only really started coping with the situation when I started treatment. Please feel free to ask any questions either privately or on this part of the forum.
Take care and look after yourself, I think the wine therapy is the most effective one for the weekends as well! (Plus a couple of days in the week!)
Nicky
Hi everyone,
When i checked the forum and saw all your messages I didn’t feel alone anymore. Thanks so much. You are all wonderful x
hi
thank you , I also dont feel alone any more, theres more hope.
Lynni - Pet scan -briefly - I have a radiative injection, into vein. rest an hour and then go into the petscan, and the radioactive solution lights up the cancer. The doctor can then see where my cancer is in the bones.
Sheena
Is this the same as a bone scan?
I think the principle is similar - but slightly different
" PET scan produces three-dimensional, colour images of your body using radiation. PET means positron emission tomography. It can be used to diagnose a health condition, or find out more about how a condition is developing. It can also be used to measure how well treatment for a condition is working.
A PET scan works by detecting radiation inside the body, and makes images that show how the radiation is being broken down. Radiation is given to the body as a medicine called a radiotracer, which goes to the part of your body that needs to be examined. "
a bone scan measures take up of a certain type of readioactive isotype in your bones, adn you only get black and white…
Cathyx
Thanks for that. I’ve only had bone scans and these PET scans have never been mentioned by my onc, unless hospital doesn’t have one.
Thanks again and take care.
Hi Everyone,
I have just been diagnosed with mets in skull, ribs, hip and femur–after collapsing with abroken neck!! Total shock as I had been discharged from breast clinic. I am now on Aromasin and have had one Zometa infusion. I felt fine until then-- now I am in pain almost constantly and often have trouble walking-- which is driving me mad as I love taking long walks with my dogs, gardening etc. Only just managed to drive to work today for the first time! Can anyone give me hope it will improve after a couple of doses? Also had the 2 year prognosis- but would love to see my son married in 2 and a half years time. Hate to sound so down, as I am usually really positive, but the pain has taken me by surprise-- its 3 weeks since injection!!
Hi caramelbunny,
I am so sorry that you have found you have secondaries now. What a shocking way to find out! When you say you broke your neck what happened? I have always associated a broken neck with permanent damage i.e. paralysis, yet you say you are mobile - with some difficulty.
My experience is just that - mine and it doesnt follow anyone else with bone mets is the same. When I was diagnosed 7 years ago with bone mets it was quite extensive like yours - in skull, ribs, spine, hips, pelvis, and collarbone. At the beginning it was very painful but by about the 3rd bone drug infusion (mine is pamidronate) and radiotherapy to some of the worst areas of pain I was able to come off painkilling meds. I was diagnosed back in 2002 and have been on pamidronate all this time. It is only this past year that I now have a lot more pain, so I have had more radiotherapy to spine and hip and am on strong painkillers. I am a bit surprised at your onc giving you a 2-year prognosis. If the 2ndaries stays only in your bones you have a good chance of surviving a lot longer than that. There are several members here with bone mets for some time now.
I think if you find your pain doesnt improve you should ask your oncologist about some radiotherapy. I hope all this has given you some hope. Do feel free to pm me if you want to chat.
Dawn
xx